Sunday, August 26, 2012

Let's be Candid(a) Here... My Medical History

First of all, let me begin by extending my deepest empathy to any of you who have stumbled upon this site. I can only assume that you have arrived here because you too are experiencing a wide range of miserable symptoms that have you up at night desperately searching the world wide web for answers since your trusted doctors haven't been able to give them to you.

If not, you are an 8 year old girl looking for Disney pictures, and you should definitely leave this site before I dash your hopes and dreams about the joy of being a woman.

Ok. So for those of you here to find comfort in knowing someone else out there has felt your pain (and itch) in the form of the following symptoms and diagnoses:

- Recurrent Yeast Infections

- Vulvadynia

- Bacterial Vaginosis

- Pain with Intercourse

- Irritable Bowel Syndrome

- Diarrhea

- Leaky Gut

- Gas

- Bloating

- Endometriosis

- Irregular Periods

- Dysmenorrhia

- Itchy Rash (Dermatitis Herpetiformis)

- Anxiety

- Depression

- Gluten Intolerance/ Celiac Disease

- Casein or Lactose Intolerance

- Migraines

- Night Sweats

- Itching/Crawling Skin

- Joint Pain

- Cystic Acne

- Chronic Fatigue

- Lyme Disease

- Chronic Sinusitis

- Brain Fog

- Sore Throats

- HPV

- Fullness/Itchiness in Ears

I'm your gal. It's overwhelming to even think back to the beginning of all of this. It's become a jumble of seemingly unrelated diagnoses one after the other, but I'm now understanding that it's been one big underlying problem causing all of the symptoms from the start.

I was born with thrush, which is basically a yeast infection all over my skin. My mother (who has been diagnosed with the autoimmune disorder, Fibromyalgia) also struggled with yeast infections before I was born, so it makes sense that I came out already fighting. As a little one, I had constant sore throats and ear infections. The doctors prescribed the yummy pink ANTIBIOTICS for each bout, and I didn't mind at all, though my mother was worried that it could have a negative effect on my little ecosystem. Her instincts were way ahead of western medicine though.... I was on ANTIBIOTICS so often, I sincerely thought that they lyrics to the Beatles song went:

"Do you need ANTIBIOTICS? I just need someone to love. Could it be ANTIBIOTICS? I want somebody to love. Oh, I get by with a little help from my friends."

And thus began my little body's battle with CANDIDA overgrowth.

At age 9 I had my tonsils and adenoids removed, which helped decrease the strep throat and ear infections, so I had a reprieve from the ANTIBIOTICS. Let's take a moment here and break down that word: ANTI = against. BIOTIC= life. 'Nough said.

The next bump in the road came during middle school. My mom was suffering from severe, debilitating joint pain, depression, and fatigue. She was hardly functioning and no doctor was able to tell us why. While she was suffering, I woke up in the middle of the night and found that I couldn't move my arms without excruciating pain (Frozen Shoulder Syndrome). I stayed home from school for 2 months with severe joint pain and no diagnosis. I eventually got better, but mom got worse. She sought help in Reno, Nevada, at a somewhat experimental and extremely expensive clinic that was known for treating the mysterious strain of autoimmune illnesses (MS, Lupus, Chronic Fatigue, Fibromyalgia, etc) using oxygenation techniques, IVs, and strict diets. She was there for six weeks and started to see some improvement. I joined her half-way through since my symptoms were similar to hers. My blood panel showed the Lyme spirochete. Research was just starting to prove a connection between Lyme disease and the autoimmune diseases, and my diagnosis was helpful in treating Mom. My aunt and cousin were also struggling with Chronic Fatigue, joint pain, and depression at the time. My cousin's blood also tested positive for Lyme. We are still not sure the connection, but there is suspicion that we all contracted Lyme Disease on a beach in Santa Barbara where we spent our summers. On our final summer there, the beach was off-limits and considered "toxic" due to sewer run-off. The four of us had also recently spent time in Texas, so that was a possibility too.

In Reno, Mom and I followed a wheat-free diet. My 13th birthday was celebrated with a wheat-free angel food cake. When I got home though, I returned to my regular diet.

My joint pain had subsided, and things were pretty smooth until puberty hit later that year. The little bastard came every 14 days and lasted 10. I was in so much pain that I would throw up and pass out from the cramps. I finally went on the pill at age 15 and unfortunately I have been on it ever since (I'm 26 now.)

At age 16 I got my first RAGING yeast infection. The itching was so intense I thought I would burst into flames. My mom brought me Monostat to school and I applied in the bathroom. By 9th period my lady parts were so swollen, I could hardly walk. After suffering through a choir concert (good thing those skirts were huge) I finally made it to my gynecologist. He was fascinated. All of the medical interns were brought in to observe the terrible reaction happening between my thighs. They decided I must have been allergic to the Monostat and from that point forward, the yeast infections that were happening every month or so were treated somewhat successfully with Diflucan. Interestingly, the yeast never tested positive. My gyno diagnosed trichomoniasis at one point as well.

During high school, I also suffered from severe IBS. I had constant diarrhea, gas, and bloating. I ate whatever I wanted ALL THE TIME, and still weighed around 120 pounds at 5'6". I come from an Italian family and we ate pasta constantly. I ate a croissant every morning, fast food for lunch, pasta for dinner. It never occurred to me that it wasn't normal to run to the bathroom after each meal.

I also became sexually active around all this, and the pain during sex was terrible for a long time. I was terrified that I'd contracted some sort of STD like PID (Pelvic Inflammatory Disease) that was causing all of the pain, but nothing was every proven.

During my first semester of college, I came down with flu-like symptoms that hit me like a truck. I had a very high fever and was in bed for a few days. My mom drove up to take care of me, and when she took me to the on-campus health clinic, I was immediately diagnosed with Herpes. There were two small blisters on my inner labia and the doctor diagnosed visually without any follow up tests. I was devastated... suicidal... I thought my life was over. She prescribed me pain killers (???) and lidocaine. The next two weeks were a complete blur. I almost dropped out of college, but luckily found the strength to beg my professors to let me stay after missing the first two weeks of second semester. That semester I lived with the diagnosis and tried to hold my head high. I never experienced another outbreak. A year later, a different gynecologist read my medical history and was outraged that I had not had a blood test to confirm the Herpes diagnosis. When I finally had one done, it was negative. I'd gone through all of that heartache for nothing!

I was still getting constant itchy yeast infections throughout college that increased when I began dating my fiance who was uncircumcised. He began getting them too and we just passed them back and forth. Isn't this stuff lovely? I was also still experiencing a lot of pain with intercourse. I remember crying almost every time we had sex out of sheer frustration and fear for the next infection. It got to the point that we were both so hesitant to do it that we often chose not to. Lucky for me, our relationship was stronger than sex! He was the most supportive partner a girl could ask for in that situation. Good thing too, because a year into our relationship my annual pap test came up positive for HPV. It was in the third stage of pre-cancerous cells, so I had to have two extremely painful colposcopies before then having a LEEP to remove the affected layer of my cervix.

After all this, sex was even more painful. We went to a doctor to try and identify why the pain was so bad, and he did a very uncomfortable pain test (jabbing something around inside me and asking when it hurt... it all did...). I was diagnosed with Secondary Vaginismus and Vulvodynia. I had been desperately reading about all of my symptoms on the internet and found some interesting connections between all of my menstrual symptoms. I felt sure that Endometriosis (which runs in my family) was causing all of the pain. I had a laparoscopy done at 19 which did identify a few endometrial lesions. I felt relieved that at least something had a diagnosis proven my WESTERN MEDICINE. The treatment was just continued use of the pill and anti-inflammatory medicine.

For the yeast infections, which were still frequent, I tried everything. Literally everything. I stayed away from Monostat like the plague, but used any other topical cream I could find. I ate yogurt. Used garlic suppositories, apple cider vinegar baths, baking soda baths, yogurt-covered pads (ew). The homeopathic stuff helped ease the symptoms, but the infections kept coming. I wore only white cotton panties and tried to use products that were allergen free and for sensitive skin. My fiance also suffered from psoriasis during this time.

Throughout all of this, I was ALWAYS TIRED. It was a joke among my friends that I could fall asleep any time of day, any place. I could sleep for fifteen hours every night and still be tired. My mom and aunt were still suffering from Chronic Fatigue and Fibromyalgia so I assumed it was just that. I also had constant heartburn and all of the digestion problems (which at this point I had grown so used to I didn't even consider them problems!).

I learned to live with all of it throughout college and we moved to New York City when I graduated. During my first year of teaching, I continued to suffer from all of the same ailments, though new ones were starting up as well. I started getting migraines, cold sweats at night, sinus infections, and this crazy full feeling in my ears. I went to doctors and specialists to try and figure out what was going on. Just like with the vaginal pain and yeast infections, nothing was coming up on tests and doctors kept sending me home feeling crazy. I pinned it all on the new allergens in the polluted city air.

Then right around the time that the Avian Flu hit NYC, I woke up with a stabbing pain in my stomach. It was so severe we went to an urgent care clinic. I also had a sore throat and was vomiting in the waiting room. The doctor diagnosed me with the bird flu. The flu medicine didn't make it go away though, and I was back with the stabbing pain a week later. He then suspected that it was a peptic ulcer and suggested that I eat a very bland diet for a while. Just like, plain pasta, bread, rice, etc...

BOOM.

Things got worse and fast.

Generally exasperated with the doctors at that point, I went to see an acupuncturist in Brooklyn. When she heard all of my symptoms she suspected Candida, stuck needles in me, and suggested I try a Candida cleanse.

It wasn't the first time I'd heard about Candida, as my Mom and Aunt had been aware of it thanks to their own autoimmune research, but the culmination of all the pain and something about hearing it from an outside source convinced me to try it.

I cut out gluten, sugar (including fruit), alcohol, and most starches. I'm not going to lie. It was the hardest thing I've ever done! Within DAYS though, I started to feel a huge difference. My stomach pain went away, my head started to clear, I could hear again, my headaches and sinus infections started decreasing and I was generally feeling on top of the world. It was during this time that I finally realized that GLUTEN had been the source of all of my problems.

One downside at first was that I gained about 10 pounds. I couldn't understand why I was eating the best I'd ever eaten and GAINING WEIGHT. It turns out that I hadn't been properly digesting my food for so many years and I was finally getting the nutrients my body so desperately needed!

At that point, I had researched Celiac Disease and began to piece together so many of my symptoms. The pain during sex made so much more sense when combined with the knowledge that my intestines were under constant attack. If you look at the side view of the female anatomy, you can see how close the vaginal cavity and intestines are. If one is swollen, the other is most definitely affected. The simplest answer is usually the right one.

The diarrhea must have also been a big factor in the constant yeast infections. I started taking a strong probiotic called ThreeLac which I've continued to use and find that it helps a lot.

Unfortunately, because I self-diagnosed and began the gluten-free diet, I've been unable to get a positive Celiac test. The antibodies must be present for the test, and my body had already cleared them out by the time I realized what it was. Until recently, I didn't really care as long my symptoms were kept under control by the diet.

I've been Gluten-Free for three years now. I have only had 2 yeast infections during that time and I know now that those were because I was so much less careful about sugar/Candida when I identified Gluten as the main problem. I understand now that Gluten and Candida are the two poisons for my body and I need to be very careful about both.

The reason I felt motivated to write up this insanely long and somewhat embarrassing medical history is because I just got another wakeup call about my body. After three years of following a very strict diet and NEVER knowingly cheating, I ate a freakin' Drunken Noodle at my favorite Thai place. I knew it had soy sauce (second ingredient: wheat.) but I felt so in control of my body that I figured one little Drunken Noodle couldn't derail all the improvement. And I also felt like I probably had gluten-intolerance from the Candida and not full-blown Celiac Disease.

WRONG.

Two days later I woke up with a HUGE RASH on my left arm. It was intensely itchy, red, and had little bumps all over it. I remembered hearing about the "Celiac Rash" from someone and looked it up right away. It was a dead ringer for Dermatitis Herpetiformis which confirms that I do indeed have Celiac Disease. I have been treating the rash with internal and topical Braggs Apple Cider Vinegar and Calendula cream which has helped immensely. The joint pain also came back instantly and I just this morning woke up with a migraine. I have switched all of my personal care and household cleaning products to Gluten Free and have re-committed to being completely aware of everything I put in and on my body.

It has taken all of this suffering to understand something wonderful: we are in charge of our own bodies. When you really focus on your body, it will tell you what is wrong and how to fix it. It really doesn't take "self-control" or "will-power" to follow the diet that's right for you. The process is so worth the results that you won't even consider cheating for the sake of one tasty treat. I am so thankful to have discovered the connection between all of this relatively early in life. I'm still eager to understand more about Celiac Disease and Candida and their relationship. I welcome you to share your advice, experiences, resources, and questions. During such a precarious time in our country's handling of health care and female reproduction issues, it's extremely important to be as self-sufficient and knowledgeable about our bodies as possible.

9 comments:

I wanted to thank you for your post. I go see a naturopath tomorrow in hopes to find more answers to my VERY VERY similar issues. Im so tired of feeling sick. But just as you said, i am listening to my body and trying to heal it. Thank you again for your story and encouragement! -Jessica

Thank you so much for writing this. I've been on the verge of tears since last November, when Super Storm Sandy forced me out of my home. While staying with my folks and commuting long hours, I relaxed my diet and ate whatever was available. Until that time, I was under the impression that I had a mild candida problem (with chronic sinus and occasional yeast infections). Two weeks after I was evacuated, my body was covered with a very itchy rash and blisters. It took me two months to figure out that I probably have had Celiac my whole life and didn't know it. I immediately cut the gluten from my diet and made an appointment with the Celiac specialist in NY. Unfortunately, now I'm off gluten, it's hard to get a diagnosis. I'm sitting here now with an accidental outbreak (due to not realizing that Campbells Soup puts wheat flour in their tomato soup) and I still can't get an appointment to get a biopsy on the many blistering sores on my body. I'm sure they will be gone before I even hear back from my doc. I'm going to try your Brags and Calendula remedy and learn to live with my self diagnosis.

this story nearly brought me to tears. my story is almost exactly the same. i've been struggling for years with what i now know is candida/lyme/celiac, and it helps to know that there are others out there like me who are going through the same thing. thank you so much for taking the time to write this. i hope you'll post updates!!!

Thank you indeed for sharing your story. I wish you continued healing. I have also had a similar miserable journey with similar symptoms and have recently self-diagnosed and figured all this out for myself. I have been gluten-free (except for a few accidental contaminations) for just under 3 months. I am a lot better, and looking forward to the improved health I expect to experience in the next year or so. The worst thing that has happened to me because of all this horror is that the chronic tiredness has nearly ruined my work history and personal life. I look forward to taking control and having the life I always deserved!

Thank you :) And wow, you have been through so much worse than me. But Im so happy you fou d something that definately worked for you and its helping me hope that continuing the candida diet will help me as well. I dont know what exactly is wrong with me, but ever since i took antibiotics 9 months ago i get a vaginal yest infection-with every ounce of sugar that goes into my body. Instantly i feel it as I consume just 1 slice of an apple, or any dairy product, or wheat product, or a mushroom or a slightly old moldy-smelling vegitable.

One of my coworkers just asked me about candida albican in regard to celiac. I've been diagnosed with Celiac for six years but I hadn't looked into candida. I looked it up and found your blog. Of your diagnoses listed, I have 24. My sister also has celiac but would rather suffer than cut out foods. Her endometriosis ended in a hysterectomy while mine just fizzled away after I cut out all dairy and gluten. Keep in mind, I was diagnosed with stage 4 endometriosis 19 years ago and have 1/3 of one ovary left. My sister continues to have sinus infections, requiring surgery to remove polyps. I quit drinking dairy after two surgeries and no longer have severe sinus infections.

I had the cystic acne, blisters, eczema and rashes all over my skin. Today my skin is primarily clear. I no longer require prednisone, antidepressants, iron and blood transfusions, nor do I break bones on a regular basis.

Diet modifications have pretty much saved my life. I was considering applying for disability because I couldn't function at work anymore. Normal tasks were too difficult to manage.

Sometimes I feel like I'm not quite right and I'm wondering if it's the sugar. I am definitely a sugar addict. I crave it all the time. Since I'm a runner I chalk it up to needing fuel for running, but if I can feel even better, I'm up for cutting a little more from my diet. Thanks for your article. I will continue to check into this. It's good to know we aren't alone.

Wow, thank you for sharing this story. I've suffered from eczema and several other issues due to candida overgrowth. My daughters have as well. In February we were blessed to have had a friend share the products ProBio5 and BioCleanse with us. ProBio5 is one of the most natural probiotics and works with the BioCleanse on riding our systems of the candida. Now only a few months later my eczema is cleared, my allergies are under control and my daughter's acne is maintained. If you are interested in learning more about these products check out www.plexusslim.com/willyard40